A mother in her 20s who hoped that having her uterus removed would help relieve her painful endometriosis symptoms was denied the surgery because of her age and an assumption that she might want more children in the future.

The woman and her husband, who have two children, were determined that a hysterectomy would solve her problems. However, the specialist doctor she was seeing at the time spent considerable time trying to convince the couple to re-think the irreversible option.

The woman has since had the surgery after leaving the doctor’s care and consulting another.

“I can now be the active, healthy, present mother I had always hoped to be for my two children.

“My pain has significantly reduced and I am no longer bound by my dysfunctioning body. It is so disappointing that this level of freedom was not afforded to me sooner,” the woman told the Health and Disability Commissioner after laying a complaint about the care she received from the first doctor.

In a decision released today Deputy Health and Disability Commissioner, Deborah James found the doctor breached the woman’s health consumer rights on one aspect of her complaint, and recommended that the doctor apologise to the woman, and re-familiarise himself with the Medical Council’s statements on communication and consent.

The woman also raised concerns about the doctor’s communication with her generally.

The doctor accepted that there were aspects of his communication that might have been handled better.

James said the care provided by the gynaecologist, who worked both publicly and privately, appeared to have been unduly influenced by his own views about what he perceived to be the best course of action for the woman.

An independent specialist she sought to assist her with the case felt that most gynaecologists would not rush to offer a hysterectomy to a woman of her age - but equally, the option should not be withheld purely on the basis of age, and that ongoing discussion about it, particularly after counselling and perhaps a second opinion, would make this a reasonable option to discuss openly.

The woman also advised the HDC that she suffered permanent nerve damage in her thigh secondary to being placed in a particular position during a second laparoscopic excision of endometriosis performed by the doctor in November 2020.

Complaint timeline

The woman was referred to the specialist in 2019 with pelvic pain, who confirmed and removed a moderate amount of endometriosis.

The following May she returned to the same doctor complaining of pelvic pain again and was recommended to try a different oral contraceptive pill, and the possibility of introducing pain modulators was discussed.

The doctor explained that “there [would] be a role for a second laparoscopic procedure”, but he wanted to avoid this procedure for as long as possible and first try to “exhaust all other medical options”.

A follow-up appointment in July 2020 recorded that the different contraceptive was working well but the pain modulator was making the woman “very sleepy” and an alternative was suggested.

The doctor again documented that the plan was to try to exhaust all the medical options before considering further laparoscopic surgery.

The woman was experiencing bleeding and pain and booked an early follow-up appointment. She had tried switching back to a contraceptive she was on previously but this did not stop the bleeding or pain.

The doctor noted that although the surgery would “definitely sort out the bleeding” a small chance remained that the pain could persist.

He explained that offering a hysterectomy at her age was a case that would need to be discussed in the endometriosis multi-disciplinary meeting and would need to have some consensus from different consultants.

The doctor also suggested that not having tried the small T-shaped hormonal contraceptive device, a Mirena, as suggested would make it more challenging to present the woman’s case.

The woman told the HDC that she had declined a Mirena on multiple occasions previously and she felt that the doctor had “verbally coerced” her into agreeing to the Mirena insertion.

Her understanding was that the doctor would present her case to the multi-disciplinary team if she tried the Mirena and that she was “essentially being blackmailed” into agreeing to a form of medication she did not want but begrudgingly accepted.

The doctor was under the impression that the woman wanted to proceed with the insertion, which was attempted, but not tolerated so the woman was booked to have the Mirena insertion under general anaesthetic the next day at a private hospital.

The woman said the attempted insertion was “the single most painful thing I have experienced”.

The doctor documented that he would refer the woman’s request for a hysterectomy to the endometriosis multi-disciplinary meeting at the public hospital.

Recommendations from multi-disciplinary team

He told her it had been recommended that the next option would be treatment to suppress ovulation and induce temporary menopause plus hormone replacement therapy and that a clinical psychology review was done and a second opinion from another gynaecologist before proceeding with a hysterectomy.

The woman was sceptical that the doctor had taken her case to the meeting because she received nothing in writing and no further information.

Deborah James said there was no documentation outlining what specific recommendations were discussed and whether those recommendations were progressed, however, independent assessment was there was no reason to doubt that the case was presented.

In November 2020 the woman underwent a second laparoscopic excision that was said to be without complication but within a few hours of waking from the surgery, the woman noticed that her right thigh was “completely numb”.

At a follow-up appointment, the doctor said he believed it was likely due to compression of the nerve, secondary to lithotomy position the woman was placed in.

After an appointment in December 2020, the woman told the doctor that she did not want any further follow-up with him as she was seeing another gynaecologist.

The doctor later apologised to the woman for the distress that she had experienced.

James said that based on the advice from the obstetrician and gynaecologist from whom she had sought guidance on the case, no departure from the standard of care was identified but she was concerned that the doctor had not provided the woman with information that a reasonable person in her circumstances would expect to receive regarding the options to treat her bleeding and pain.

Neither had he given the woman honest and accurate answers about the multi-disciplinary meeting.

James said it was her view that the woman had a right to receive an explanation of the available option of a hysterectomy.